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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Genova Diagnostics has an office in London and the NutrEval is available in many countries. Their website is www.gdx.netwhere can i do that test, i am in europe and very severe, do you have a link that gets me there directly? ty
Are the tests based on urine and is that reliable
Is the idea that excessive brain glutamate causes problems
Is there any way to test or evaluate glycolysis or fatty acid oxidation?Unless we're all being starved or on an especially low-carb diet, this implies we have an impairment in glycolysis and a deficiency in pyruvate production. There's a link to McGregors research in this thread intro, he believes impaired glycolysis is at the root of ME/CFS.
So sorry to hear that. Last year I had success with Keto: lost 30 lbs (most of excess weight) & felt overall better in terms of energy and cognition (though mild).It has been proposed ME/CFS starts as a glycolytic impairment but with more severe patients also having mitochondrial impairment. My own experience supports this. First adapting to Keto, bypassing glycolysis I enjoyed a huge improvement from moderate to mild, only to wreck that with a short power walk and now Keto doesn't work for me anymore and I'm down to severe.
Is there any way to test or evaluate glycolysis or fatty acid oxidation?
However, referencing your mitochondrial markers in the OAT guide it quotes "The Organic Acids Test detects levels of malic acid, which, when elevated simultaneously with citric, fumaric, and alpha-ketoglutaric acids, strongly suggests cytochrome C oxidase deficiency, indicating dysfunction in the mitochondrial energy pathways." You appear to fit that description!? This might be worth raising with your doctors? There are a few conditions with COX deficiency here for example and there may be other possibilities which could be receptive to treatment. Thank you so much for posting, fascinating!
I just read your link, and I see it says it mostly is a genetic thing that starts in infants, sometimes adolescents or early adulthood. I am 60 y/o right now, and all this began for me at age 45, so now I am wondering if it can not be genetic, but acquired?
Anyone know what kind of doctor might address the above issues??
Keep in mind the test result is not diagnostic, only indicative, even if they do use the words 'strongly suggestive'! But certainly worth raising with your doctor to explore further. You're right, a genetic COX deficiency would most likely have shown symptoms long before age 45. Research suggests other factors such as high ROS or NO, may also suppress expression, so easily be associated with an immune response. Does coffee help your symptoms? This research article 'Feeding Mitochondria' suggests caffeine, vitamin E and to some extent selenium can stimulate complex IV activity. I do wish you luck exploring this further.
Is there any way to test or evaluate glycolysis or fatty acid oxidation?
After listening to Peter Attia's interview with Inigo San Millan, I sought out the type of metabolic testing he described that he does in his Colorado lab. I found a local physical therapy practicect that deals with elite athletes and was able to do their treadmill based test, which involved putting on a very uncomfortable mask for 20 minutes and laying on a table, then getting onto a treadmill and walking slowly in 2 minute increments gradually increasing the slope every 2 minutes, until I was weak limbed and collapsed. The output of the test tells you whether you're burning glucose or fat at various time points throughout the 45 to 60 minute test.Other than the usual diabetes checks (blood glucose and insulin) in conjunction with OAT test, I'm not aware of additional evaluation testing of glycolytic function. OAT test also reveals fatty acid metabolites and ketones, I don't know how else one could measure fatty acid oxidation. @Learner1 was having these tested by experts apparently, maybe can help answer your question how this was being done.
AKG isn't on the Great Plains OAT test.the OAT guide it quotes "The Organic Acids Test detects levels of malic acid, which, when elevated simultaneously with citric, fumaric, and alpha-ketoglutaric acids, strongly suggests cytochrome C oxidase deficiency, indicating dysfunction in the mitochondrial energy pathways
I have acquired mito dysfunction and have a lot of interesting abnormalities I've been tracing down. I have consulted with two mito specialists, but they really showed little interest in helping me because they only deal with genetic mito issues which I don't seem to have. So the deal is to look for a mitochondria and metabolism specialist, but I haven't found one anywhere in the US that will see patients. There is a research lab at the University of Washington in this area but the only patients they see are mice.I am wondering if it can not be genetic, but acquired?
Anyone know what kind of doctor might address the above issues??
I have a bad AMPD1 SNP that results in excess adenosine after exercise, which makes me sleepy. Caffeine, in the form of coffee, helps to dissipate this excess adenosine. So, there are multiple benefits to caffeine.Does coffee help your symptoms? This research article 'Feeding Mitochondria' suggests caffeine, vitamin E and to some extent selenium can stimulate complex IV activity. I do wish you luck exploring this further
AKG isn't on the Great Plains OAT test.
From the Genova interpretive guide:s "The Organic Acids Test detects levels of malic acid, which, when elevated simultaneously with citric, fumaric, and alpha-ketoglutaric acids, strongly suggests cytochrome C oxidase deficiency